Saturday, February 23, 2013

First of all, thank you for your responses re: night splints. As for those of you who are wondering what plan of action I'm following, it's like this (please keep in mind, we've been doing this for a total of three days):

1. I had a plan, more or less, to have E wear her braces at night long enough to warrant a real trial. I figured if she wore night splints for ~3 months, if it were to make a difference, I would see it by then.

2. I made a calendar. I told her I wanted her to wear splints for "this many days" (now until early June--the end of school). She seemed to understand the time frame, at least in theory. I mentioned that every weekend she would get a reward--something special, like a special breakfast, dinner, etc. I also mentioned that at the end of the trial, she would get a HUGE reward. Her choice. I did say "a pony" and "superhero powers" were out of the question. I left it up to her.

3. I wrote the ramp-up on the calendar: Thursday night, 2 hours; Friday night, 4 hours; Saturday night, 6 hours; Sunday night, 8 hours; the rest blank, hoping for a smooth transition to all-night splinting. E was on board. The first night, she was hesitant, cried a little...made me promise that if she was asleep, I'd take off the splints after 2 hours. She was, and I did. Second night, she cried 3 hours in--and she managed another 45 minutes and I took them off. This night, it's supposed to be 6 hours, but I'm hoping for anything longer than the previous night. Elena is a side/tummy sleeper, which makes having leg (knee) splints difficult--but she is really doing a great job at it. She is trying so hard, bless her little heart.

I let her decide what rewards she should get in the next few weeks...look forward to crazy nail polish, possibly colored hair, and interesting meals. And if anyone knows anyone who works at the American Girl Doll Company, we'll be writing you a fat check mid-June, if this pattern holds up.

Tuesday, February 19, 2013

Okay, nightmare might be a little extreme...but that's kind of what I am anticipating.

Elena had a checkup with her orthotist today. She's still tight from decreased movement from being sick; but there is no denying that her legs are very tight--her hamstrings and gastrocs especially. This is not a big surprise...she has grown quite a bit, and her spasticity has increased (marginally, I think, but compounded with growth it is easily noticeable).

Surgery isn't really a consideration right now. Her contractures are small enough not to warrant intervention. But, if we want to try to help Elena move better, she needs prolonged stretching.

She is doing well in school, and is an active child. The only logical time for a prolonged stretch is at night, while she sleeps.

The good news is we can have night splints made for this. We had some options to start this a few years ago, but Elena's nighttime difficulties and terrible "sleeping" habits made this near impossible. Thanks to our wonderful family psychologist, E now goes to sleep very well, and I was (am) hesitant to interfere with our new bedtime routine.

So, I'm stuck between a rock and a hard place. No one wants to make E sleep with cages on her legs. I feel like she thinks it's some kind of punishment...and we're only trying to help. And I cannot imagine that stretching for 8 hours nightly won't make a difference.

Elena was present while we all talked about options. She was upset--I was too. She also understands on some level, that her tightness is a problem, and there is a non-surgical option that we want her to try. It's unfair for someone so young to have to process this, no doubt. It's also never going to change--unless, maybe, prolonged stretching makes a difference. I think it is worth a try.

I want Elena to weigh in as much as possible in the sleep stretching plan. My idea is to slowly transition (hours per night, type of brace) from zero to (hopefully) 8+ hours of wearing her splints nightly, for a test period of 3-4 months. I want to take pictures every morning and see if, and when, any changes are observed. And then share them here.

If you've already tried this, I'd love any information you have to share.

Saturday, February 16, 2013

We're back from a great vacation to Disney World. This was the first time I got to enjoy the parks (technically was there when I was three--I only remember a teetering head and "It's a Small World"), but Jason has been before and his parents LOVE IT. Nana and PopPop are Disney experts, and they made this trip possible.

We got to the airport on a cold morning. Elena and Vivian both walked through the airport--both of them, actually, until we got on the bus to take us to the Animal Kingdom hotel. It was a significant distance--walking through both airports--and then we took transportation to the Magic Kingdom and walked around more. Jason and I were pretty astounded that E lasted that long! Both kids slept hard and fast that night.

The next day, we rented a double stroller (for the week). I had heard they were bigger than large double strollers/joggers (we have an old Schwinn double jogger, and E's pretty big in it). Viv wanted to ride. Elena didn't.

So she didn't.

She walked at least two and a half miles that day. I am not joking.

The next day, she walked at least three and a half miles. I know b/c we brought a pedometer.

She spent more time out of the stroller than Vivian. I never expected that.

Oh yeah--the Disney highlights! It is very late, so these are in no particular order...

Before their swordfight in "Norway" at Epcot

In Epcot playing Power City

After getting princess-ified (all their own choices of course)

Dining at Chef Mickey's

Ariel visited us at dinner

E finds a crutch companion in Animal Kingdom's "Leaf Lady"

Dining at Chef Mickey's

Outside the Aquarium before dinner

Princesses at night

Finding a pearl in "Japan" at Epcot

Viv conks out...E is so nice to be her pillow

Viv becomes part of the Lion King show at Animal Kingdom! E was shy and decided to stay with me.

Drumming at Animal Kingdom's "Africa"

Disney World

Five days in, E got sick. I'm not sure what happened...none of the rest of us got sick. It wasn't something she ate...could be a virus? I wondered if it was because of dehydration, but we kept her hydrated specifically to prevent constipation issues (which has happened in the past). I wondered if all her walking left her so exhausted that she got sick? I just think it is odd that if she picked up a virus, none of the rest of us got it--we had been sharing drinks since before the trip started. In all seriousness, does anyone out there know if there is a link between CP, lots of physical exertion, sun/heat exposure (no sunburn), and illness? I tried to encourage rest, eating good food, and rides in the stroller--which she was not keen on most of the time. She never complained of soreness, and her gait actually looked pretty good until right before she started looking ill.

We managed to get out of the hotel on our last day. I had E ride in the stroller most of the time, and between transports I carried her. She walked some in the airports on the way back from Disney. We are home, but she still isn't 100% better, but we're getting there.

Recent Doodle Updates

INSTAGRAM

Search This Blog

Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.